2020-10-28T11:13:50-05:00 2019-12-31 KPMG LLP 8350 Broad Street Suite 900 McLean VA 22102 990 2019-01-01 131930701 CYSTIC FIBROSIS FOUNDATION % MICHAEL P BOYLE MD CYST 3019514422 4550 MONTGOMERY AVENUE Suite 1100N BETHESDA MD 20814 MICHAEL BOYLE PRESIDENT & CEO 3019514422 2020-10-27 true JG WHITE P01498698 7032868000 2020-10-23 127.0.0.1 54028020203025000001 2020-10-28 P C48FCDF2455541838D8EE1295B79EA4EB344D0C4 F84D70DE4ED1A3D1D305868E05B483BCD107B33D 2019 2021-01-29 14:40:06Z Michael Boyle 4550 MONTGOMERY AVE STE 1100N BETHESDA MD 20814 4557943659 false X WWW.CFF.ORG X 1955 DE The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to provide all people with CF the opportunity to lead long, fulfilling lives. 16 15 888 92000 -4139609 -4173957 108058591 108894890 4441092 4147243 141144690 441790325 22146383 50945967 275790756 605778425 144315284 155248642 0 0 90187520 99469166 326000 323686 28709961 103083764 93608605 337912568 348650099 -62121812 257128326 4013935956 4476511082 238572484 239802250 3775363472 4236708832 X The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis (CF) and to provide all people with CF the opportunity to lead long, fulfilling lives by funding research and drug development, partnering with the CF community, and advancing high-quality, specialized care. false false 245607340 151680216 32567532 MEDICAL PROGRAMS - SINCE 1955, THE CYSTIC FIBROSIS FOUNDATION HAS BEEN DEDICATED TO CURING AND CONTROLLING CYSTIC FIBROSIS (CF). THE CYSTIC FIBROSIS FOUNDATION IS THE WORLD'S LEADER IN THE SEARCH FOR A CURE FOR CYSTIC FIBROSIS, A LIFE-THREATENING GENETIC DISEASE THAT AFFECTS MORE THAN 30,000 PEOPLE IN THE UNITED STATES, AND 70,000 WORLDWIDE. THE FOUNDATION ACCOMPLISHES ITS MISSION BY FUNDING LIFE-SAVING RESEARCH TO DISCOVER AND DEVELOP EFFECTIVE THERAPIES FOR PEOPLE WITH CF. THE CF FOUNDATION HAS FUNDED HUNDREDS OF MILLIONS OF DOLLARS OF RESEARCH COSTS TO HELP DISCOVER/DEVELOP CF DRUGS AND THERAPIES. THROUGH THE FOUNDATION'S EFFORTS, THE LIFE EXPECTANCY OF PEOPLE WITH CF HAS MORE THAN DOUBLED IN THE LAST 30 YEARS, AND RESEARCH TO FIND A CURE IS MORE PROMISING THAN EVER BEFORE. IN 2019, THE CF FOUNDATION INVESTED $201 MILLION INTO RESEARCH AND CARE. THE CF FOUNDATION HAS ATTRACTED SIGNIFICANT INDUSTRY INVOLVEMENT IN THE FIGHT AGAINST CF BY FUNDING CONTRACTED DRUG DISCOVERY AND DEVELOPMENT RESEARCH CONDUCTED BY BIOTECHNOLOGY COMPANIES. IT ALSO PROVIDES MATCHING AWARDS TO CF DRUG DEVELOPERS FOR CF RESEARCH AND FUNDS A SPECIALIZED CF CLINICAL TRIALS NETWORK OF NEARLY 90 FOUNDATION-ACCREDITED CARE CENTERS. AS A RESULT OF THIS FUNDING, IN 2019 THE CF DRUG DEVELOPMENT PIPELINE HAD 29 THERAPIES IN DEVELOPMENT IN ADDITION TO 15 FDA APPROVED TREATMENTS THAT ADDRESS COMPLICATIONS LIKE INFECTIONS AND A POTENTIAL CURE. THE TREATMENT AND CARE PROTOCOLS DEVELOPED BY THE CF FOUNDATION ARE HELPING TENS OF THOUSANDS OF PEOPLE WITH THE DISEASE LIVE LONGER, HEALTHIER LIVES. TO SUPPORT ITS MISSION, THE FOUNDATION FUNDS AND ACCREDITS A NATIONWIDE NETWORK OF MORE THAN 130 CARE CENTERS. THE CARE CENTER NETWORK PROVIDES THE BEST CARE FOR PEOPLE WITH CF AND HAS BEEN RECOGNIZED BY THE NATIONAL INSTITUTES OF HEALTH AS A MODEL OF CARE FOR A CHRONIC DISEASE. IN 2019, THE FOUNDATION PROVIDED MORE THAN $41 MILLION OF SUPPORT FOR CARE CENTERS AND CLINICIANS. THE FOUNDATION'S PATIENT REGISTRY COLLECTS INFORMATION ON THE HEALTH STATUS OF MORE THAN 31,199 PEOPLE WITH CF, PROVIDING CAREGIVERS AND RESEARCHERS CRITICAL INFORMATION TO HELP IDENTIFY NEW HEALTH TRENDS AND EFFECTIVE TREATMENTS AND IMPROVE THE QUALITY OF CF CARE. THE PATIENT REGISTRY IS AN INTERNATIONALLY RECOGNIZED MODEL FOR OTHER NONPROFIT HEALTH ORGANIZATIONS, INCLUDING CF ADVOCACY GROUPS. 22103810 3568426 COMMUNITY SERVICES - THE FOUNDATION PROVIDES MUCH-NEEDED SUPPORT FOR PATIENTS AND THEIR FAMILIES AS THEY MANAGE THE PHYSICAL, EMOTIONAL, AND FINANCIAL CHALLENGES OF LIVING WITH CF - FROM SUPPORTING SPECIALIZED QUALITY CF CARE, TO PROVIDING INFORMATION AND RESOURCES TO HELP PEOPLE WITH CF BECOME EFFECTIVE PARTNERS IN THEIR CARE TO PROGRAMS TO HELP AFFECT THE ISOLATION OF LIVING WITH THIS DISEASE. APPROXIMATELY 31,199 PEOPLE WITH CF WERE SERVED IN 2019, INCLUDING APPROXIMATELY 766 INDIVIDUALS WHO WERE NEWLY DIAGNOSED. LACK OF ADEQUATE INSURANCE COVERAGE FOR CF MEDICATIONS HAS BEEN A CONSISTENT CONCERN FOR THOSE LIVING WITH THE DISEASE AND THEIR FAMILIES. COMPASS IS A HIGHLY PERSONALIZED SERVICE TAILORED TO AN INDIVIDUAL'S CIRCUMSTANCES RELATED TO COMPLEX INSURANCE, FINANCIAL, LEGAL, AND OTHER ISSUES THAT CAN PREVENT ACCESS TO MUCH-NEEDED CF THERAPIES AND CARE. IN 2019, SKILLED CASE MANAGERS ADDRESSED MORE THAN 6,000 CASES FOR PEOPLE WITH CF, THEIR FAMILIES, AND THEIR PROVIDER NETWORK, INCLUDING UNDERSTANDING AND MAXIMIZING THEIR INSURANCE COVERAGE AND BENEFITS, AS WELL AS GETTING HELP WITH OTHER NEEDS RELATED TO DAILY LIFE WITH CF. CASE MANAGERS ALSO ASSISTED WITH FINDING RESOURCES FOR ISSUES RELATED TO LIFE WITH CF THAT CAN AFFECT ACCESS, INCLUDING BASIC LIVING AND FOOD EXPENSES. TODAY, MORE THAN HALF OF ALL PEOPLE WITH CF ARE AGE 18 OR OLDER. IN 2019, APPROXIMATELY 1,500 PEOPLE WITH CF AND THEIR FAMILY MEMBERS JOINED VIRTUAL EVENTS DESIGNED BY AND FOR ADULTS WITH CF, FAMILY, CLINICIANS AND RESEARCHERS INCLUDING BREATHECON, FAMILYCON AND RESEARCHCON, THAT PROVIDE AN OPPORTUNITY FOR THE CF COMMUNITY TO CONNECT, SHARE, AND LEARN FROM PEERS THROUGH OPEN AND HONEST DIALOGUE. 17584009 PUBLIC AND PROFESSIONAL INFORMATION AND EDUCATION - TO BROADEN ITS REACH AND TO SUPPORT ITS MISSION, THE CF FOUNDATION HAS PROGRAMS DESIGNED TO IMPROVE THE KNOWLEDGE OF PEOPLE WITH CF AND THEIR FAMILIES, MEDICAL PROFESSIONALS AND THE GENERAL PUBLIC REGARDING THE DISEASE. IN 2019, THERE WERE 27 PUBLICATIONS AND 39 VIDEOS PRODUCED AND MADE AVAILABLE TO SUPPORT EDUCATION AND AWARENESS. YEAR-ROUND, MEETINGS AND CONFERENCES PROVIDE UPDATES FOR CF RESEARCHERS, PHYSICIANS AND ALLIED HEALTH PROFESSIONALS AND OPPORTUNITIES FOR COLLABORATION ON FUTURE CF RESEARCH PROJECTS AND TREATMENT/CARE EFFORTS. IN 2019, OVER 3,063,346 UNIQUE VISITORS CAME TO THE CF FOUNDATION'S WEBSITE. NEW CONTENT ON CFF.ORG IN 2019 INCLUDED THE LAUNCH OF 11 NEW SECTIONS AND 90 BLOG POSTS. 285295159 true false false true false false false false false false true true false false false true true false false false true true false true true true false true true true false false false false false false false false true false false false false true true false false false true 1742 1 true 888 true true true false false false false true true false false false true false true false X 16 15 false false false false false false false true true false true true true true true true true true true true false AL AR CA FL GA HI IL IN KS KY MD MA MI MN MS NH NJ NM NY OR PA RI SC TN UT VA WV WI X X MICHAEL P BOYLE MD 3019514422 4550 MONTGOMERY AVE SUITE 1100N BETHESDA MD 20814 X JACK MAHLER MD CHIEF INVESTMENT OFFICER 40.0 0.0 X 1129788 0 454050 PRESTON CAMPBELL MD PRESIDENT & CEO 40.0 0.0 X X 1296038 0 160730 MARC S GINSKY EXECUTIVE VP, COO & SECRETARY 40.0 1.0 X 798697 0 196290 ERIC KOEHRSEN MANAGING DIRECTOR, INVESTMENTS 40.0 0.0 X 724272 0 181211 EARL LEE MANAGING DIRECTOR, INVESTMENTS 40.0 0.0 X 795644 0 31560 VERA H TWIGG EXECUTIVE VP & CFO 40.0 1.0 X 616492 0 116663 MICHAEL P BOYLE MD SR.VP,THERAPEUTICS DEVELOPMENT 40.0 0.0 X 572626 0 110366 WILLIAM SKACH MD SENIOR VP, RESEARCH AFFAIRS 40.0 0.0 X 553576 0 108709 BRUCE MARSHALL MD SENIOR VP, CLINICAL AFFAIRS 40.0 0.0 X 570534 0 44951 CHRIS GEGELYS SENIOR VP, CHIEF LEGAL OFFICER 40.0 1.0 X 508694 0 76727 DRUCY S BOROWITZ MD SENIOR VP, COMMUNITY AFFAIRS 40.0 0.0 X 542352 0 28284 ANTHONY DURMOWICZ MD VP, CLINICAL DEVELOPMENT 40.0 0.0 X 519124 0 45129 C RICHARD MATTINGLY FORMER OFFICER 0.0 0.0 X 101212 0 0 LOUIS A DEFALCO VICE CHAIR 5.0 0.0 X 0 0 0 RICHARD J GRAY ESQ VICE CHAIR 5.0 0.0 X 0 0 0 CAROLE B GRIEGO MD TRUSTEE 3.0 0.0 X 0 0 0 SUSAN L HOOK TRUSTEE 3.0 0.0 X 0 0 0 CATHERINE C MCLOUD CHAIR 8.0 0.0 X 0 0 0 CHAD T MOORE TRUSTEE 3.0 0.0 X 0 0 0 DAVID A MOUNT TREASURER 3.0 0.0 X 0 0 0 ROBERT H NIEHAUS VICE CHAIR 5.0 0.0 X 0 0 0 ERIC R OLSON PHD TRUSTEE 3.0 0.0 X 0 0 0 TERESA L ELDER TRUSTEE 3.0 0.0 X 0 0 0 STEVEN SHAK MD TRUSTEE 3.0 0.0 X 0 0 0 THEODORE J TORPHY PH VICE CHAIR 5.0 0.0 X 0 0 0 JOHN S WEINBERG EXECUTIVE VICE CHAIR 5.0 0.0 X 0 0 0 PAUL W WHETSELL TRUSTEE 3.0 0.0 X 0 0 0 KC BRYAN WHITE TRUSTEE 3.0 0.0 X 0 0 0 8729049 0 1554670 218 true true false VERTEX PHARMACEUTICALS INC 50 NORTHERN AVE BOSTON MA 02210 CONTRACTED RESEARCH 12500000 CLINICAL RESEARCH SEQUENCING PLATFO 415 MAIN STREET CAMBRIDGE MA 02142 CONTRACTED RESEARCH 6441110 CORBUS PHARMACEUTICALS INC 100 RIVER RIDGE DRIVE NORWOOD MA 02062 CONTRACTED RESEARCH 5000000 ARCTURUS THERAPEUTICS INC 10628 SCIENCE CENTER DRIVE SUITE 2 SAN DIEGO CA 92121 CONTRACTED RESEARCH 4100901 Laurent Pharmaceuticals Inc 355 PEEL STREET SUITE 503 MONTREAL QUEBEC CA H3C 2G9 CONTRACTED RESEARCH 3600000 125 508229 80308624 28078037 10918240 108894890 SCIENTIFIC CONFERENCE 611600 3624953 3624953 CLINICAL STUDY 541900 135305 135305 DATA SAFETY MONITORING BOARD REVENUE 541990 386985 386985 4147243 73149393 -4139609 77289002 0 44535937 22166076 22369861 0 0 0 4304985564 3936344632 368640932 368640932 368640932 15811603 80308624 15811603 135192 8999 126193 126193 0 0 0 REFUNDED OR CANCELLED GRANTS 900099 6254213 6254213 CLAIM PROCEEDS 900099 29624 29624 6283837 605778425 32567532 -4139609 468455612 143401389 143401389 204262 204262 11642991 11642991 0 6729509 3697320 1613438 1418751 171700 94335 41166 36199 71752291 39422067 17203020 15127204 5202675 2858448 1247371 1096856 10575751 5810517 2535597 2229637 5037240 2721815 1130120 1185305 0 1127995 1024990 100527 2478 309350 309350 720241 720241 323686 323686 3272948 3272948 6340491 5278463 907502 154526 12625 4166 2525 5934 6140270 3747788 652027 1740455 11371753 7729233 2004874 1637646 0 6738238 3839227 1323984 1575027 2798639 1817319 461423 519897 0 7123256 5664442 476496 982318 0 0 4034528 3244104 379614 410810 901415 619029 230600 51786 CONTRACTED RESEARCH 39719382 39719382 MEDICAL QUALITY IMPROVEMENT 716903 716903 TRAINING 699217 447790 209312 42115 OTHER 1581354 868938 543085 169331 348650099 285295159 34644979 28709961 X 1716518 427334 1289184 59884 81770 82861615 69282429 6564345 5560596 5700247 23594344 0 0 0 0 0 0 315551 344669 3056446 5846146 27102737 15988085 11545942 11114652 1746072213 3325008913 2123859053 1005305643 0 1000000 0 0 33900660 29371920 4013935956 4476511082 36567354 38067909 196882717 196869140 5122413 4865201 0 0 0 0 0 0 0 0 0 0 0 0 238572484 239802250 X 3764331282 4226469269 11032190 10239563 3775363472 4236708832 4013935956 4476511082 257128326 204217034 X false true X true false X 122210533 117148751 110650273 108058591 108894890 566963038 0 0 122210533 117148751 110650273 108058591 108894890 566963038 0 566963038 75041033 64638761 67686719 66681682 95519254 369567449 0 16333174 14060761 15116982 15369965 15976419 76857301 1013387788 52401021 0.55947 0.90305 X SCHEDULE A, PART II, LINE 12 - GROSS RECEIPTS FROM RELATED ACTIVITIES THE FOUNDATION FOSTERS COLLABORATION WITHIN THE SCIENTIFIC COMMUNITY BY HOSTING A LARGE SCIENTIFIC CONFERENCE PROVIDING A FORUM FOR RESEARCHERS AND CAREGIVERS TO SHARE THEIR PRACTICES AND INVESTIGATION RESULTS WITH ONE ANOTHER. FEES FOR ATTENDANCE AT THIS CONFERENCE ARE REPORTED ON LINE 12. THE FOUNDATION MANAGES A POST-MARKETING SAFETY STUDY MANDATED BY THE FOOD & DRUG ADMINISTRATION (FDA) IN ORDER TO ENSURE THE SAFETY OF PEOPLE WITH CF. FEES FOR THIS SERVICE ARE REPORTED ON LINE 12. REIMBURSEMENTS FOR DATA SAFETY MONITORING BOARD AND PROTOCOL REVIEW COMMITTEE RELATED COSTS ARE REPORTED ON LINE 12. true true false true 42142 true 16982 false true 1665989 false true 1521 1726634 false LOBBYING ACTIVITY THE CYSTIC FIBROSIS FOUNDATION IS FOCUSED ON CURING CYSTIC FIBROSIS AND ENSURING ALL PEOPLE WITH THE DISEASE HAVE THE OPPORTUNITY TO LEAD LONG, FULFILLING LIVES. IN ADDITION TO FUNDING CYSTIC FIBROSIS RESEARCH, THE FOUNDATION ADVOCATES FOR POLICIES THAT ADVANCE BASIC, TRANSLATIONAL AND CLINICAL RESEARCH AND DEVELOPMENT OF TREATMENTS FOR RARE DISEASES LIKE CYSTIC FIBROSIS AND STRATEGIES THAT GIVE ALL PEOPLE WITH THE DISEASE ACCESS TO HIGH QUALITY, SPECIALIZED CYSTIC FIBROSIS CARE. ADVOCACY ACTIVITIES INCLUDE EMAIL COMMUNICATION ENCOURAGING GRASSROOTS ADVOCATES TO CONTACT THEIR LEGISLATORS, ANNUAL EVENTS WHERE VOLUNTEERS MEET WITH MEMBERS OF CONGRESS TO DISCUSS ISSUES CRITICAL TO THE CYSTIC FIBROSIS COMMUNITY, DEVELOPING WEB POSTS AND PUBLICATIONS TO REGULARLY UPDATE MEMBERS OF THE CYSTIC FIBROSIS COMMUNITY OF RELEVANT LEGISLATION AND ENCOURAGE INDIVIDUALS TO TAKE ACTION, AND COMMUNICATING REGULARLY WITH FEDERAL LEGISLATORS AND AGENCIES. 6653212 2289772 4363440 20449525 13698313 6751212 11114652 GLOBAL PUBLIC EQUITY 422998835 F PVT EQTY & OTHR ILLIQUID FUNDS 334752615 F ABSOLUTE RETURN 242052193 F PERPETUAL TRUSTS 4057017 F OTHER 1444983 F 1005305643 0 0 X 801247603 204217034 204217034 597030569 8747856 8747856 605778425 339902243 339902243 8747856 8747856 348650099 SCHEDULE D, PART X FIN 48 FOOTNOTE THE FOUNDATION IS A NOT-FOR-PROFIT VOLUNTARY HEALTH ORGANIZATION EXEMPT FROM FEDERAL INCOME TAXES UNDER 501(C)(3) OF THE INTERNAL REVENUE CODE (THE CODE) AND FROM STATE TAXES AND HAS BEEN CLASSIFIED AS AN ORGANIZATION THAT IS NOT A PRIVATE FOUNDATION UNDER SECTION 509(A) OF THE CODE. THE FOUNDATION DOES NOT HAVE ANY UNRELATED BUSINESS INCOME TAX LIABILITY AS OF DECEMBER 31, 2019 AND 2018. CONTRIBUTIONS TO THE FOUNDATION QUALIFY FOR THE CHARITABLE CONTRIBUTIONS DEDUCTION TO THE EXTENT PROVIDED BY SECTION 170 OF THE CODE. THE FOUNDATION IS NOT AWARE OF ANY TAX POSITION TAKEN THAT REQUIRES DISCLOSURE BASED ON CURRENT FACTS AND CIRCUMSTANCES. THE FOUNDATION ANNUALLY REVIEWS ITS TAX POSITIONS AND HAS DETERMINED THAT THERE ARE NO MATERIAL UNCERTAIN TAX POSITIONS THAT REQUIRE RECOGNITION OR DISCLOSURE IN THE FINANCIAL STATEMENTS. true Europe (Including Iceland and Greenland) Grantmaking NONE 5305625 East Asia and the Pacific Grantmaking NONE 4083554 North America Grantmaking NONE 1993521 Sub-Saharan Africa Grantmaking NONE 116643 Middle East and North Africa Grantmaking NONE 108648 South America Grantmaking NONE 35000 Central America and the Caribbean Investments 710982000 East Asia and the Pacific Investments 237725000 Europe (Including Iceland and Greenland) Investments 416741000 North America Investments 63725000 Middle East and North Africa Investments 2127000 Europe (Including Iceland and Greenland) Program Services CONTRACTED RESEARCH 3135360 North America Program Services CONTRACTED RESEARCH 2900000 East Asia and the Pacific Program Services CONTRACTED RESEARCH 82038 1449060389 1449060389 Europe (Including Iceland and Greenland) RESEARCH STUDY 65450 WIRE Middle East and North Africa THERAPEUTICS DISCOVERY RESEARCH 6480 WIRE East Asia and the Pacific QUALITY IMPROVEMENT 113700 WIRE North America CLINICAL RESEARCH STUDY 374360 WIRE Europe (Including Iceland and Greenland) CLINICAL RESEARCH CENTER 1420762 WIRE Europe (Including Iceland and Greenland) QUALITY IMPROVEMENT 921634 WIRE North America RESEARCH 107379 CHECK Europe (Including Iceland and Greenland) RESEARCH 134622 WIRE Europe (Including Iceland and Greenland) CLINICAL RESEARCH STUDY 144253 WIRE Europe (Including Iceland and Greenland) RESEARCH 131871 WIRE Europe (Including Iceland and Greenland) QUALITY IMPROVEMENT 20379 WIRE Europe (Including Iceland and Greenland) PILOT STUDY 54000 WIRE Europe (Including Iceland and Greenland) RESEARCH 135000 WIRE Europe (Including Iceland and Greenland) RESEARCH 135000 WIRE Europe (Including Iceland and Greenland) RESEARCH 135000 WIRE South America RESEARCH 35000 WIRE North America RESEARCH 267840 CHECK Europe (Including Iceland and Greenland) QUALITY IMPROVEMENT 511283 WIRE Europe (Including Iceland and Greenland) PILOT STUDY 54000 WIRE Middle East and North Africa CLINICAL RESEARCH 52920 WIRE Europe (Including Iceland and Greenland) CLINICAL RESEARCH 616965 WIRE Europe (Including Iceland and Greenland) RESEARCH 135000 WIRE Europe (Including Iceland and Greenland) QUALITY IMPROVEMENT 23701 WIRE Middle East and North Africa CLINICAL RESEARCH 49248 WIRE North America CLINICAL RESEARCH STUDY 557497 WIRE Europe (Including Iceland and Greenland) RESEARCH 208497 WIRE East Asia and the Pacific RESEARCH 108000 WIRE North America PILOT STUDY 54000 WIRE North America QUALITY IMPROVEMENT 54000 WIRE East Asia and the Pacific CLINICAL RESEARCH 603962 WIRE East Asia and the Pacific CLINICAL RESEARCH STUDY 1476089 WIRE North America CLINICAL RESEARCH STUDY 68905 CHECK Europe (Including Iceland and Greenland) PILOT STUDY 108000 WIRE North America CLINICAL CARE RESEARCH 375280 WIRE North America RESEARCH 134260 WIRE Sub-Saharan Africa CLINICAL RESEARCH 116643 WIRE Europe (Including Iceland and Greenland) CLINICAL RESEARCH STUDY 53957 WIRE Europe (Including Iceland and Greenland) PILOT STUDY 49680 WIRE Europe (Including Iceland and Greenland) CLINICAL RESEARCH STUDY 60000 WIRE Europe (Including Iceland and Greenland) PILOT STUDY 51571 WIRE Europe (Including Iceland and Greenland) RESEARCH 135000 WIRE East Asia and the Pacific CLINICAL RESEARCH 1781803 WIRE 35 0 true false true true true false PROCEDURES FOR MONITORING GRANT FUNDS OUTSIDE OF THE U.S. THE ORGANIZATION HAS PROCEDURES IN PLACE TO MONITOR THE SCIENTIFIC PROGRESS AND FINANCIAL ASPECTS OF GRANTS AWARDED TO ENTITIES OUTSIDE OF THE UNITED STATES. THE ORGANIZATION FOLLOWS THE U.S. DEPARTMENT OF TREASURY ANTI-TERRORIST FINANCING VOLUNTARY BEST PRACTICES GUIDELINES FOR CHARITIES. IN COMPLIANCE WITH THE BEST PRACTICES, THE ORGANIZATION COLLECTS AND REVIEWS INFORMATION ABOUT THE PROSPECTIVE GRANTEES AND CONDUCTS A VETTING PROCESS TO ENSURE THEY ARE NOT SUSPECTED OF ACTIVITIES RELATED TO TERRORISM. ONCE A GRANT IS APPROVED, A WRITTEN AGREEMENT IS SIGNED BY BOTH THE ORGANIZATION AND THE GRANTEE. FUNDING IS INCREMENTAL AND SPONSORED INSTITUTIONS ARE REQUIRED TO SUBMIT ANNUAL REPORTS OF EXPENDITURES AS WELL AS SCIENTIFIC PROGRESS REPORTS. SCIENTIFIC REPORTS ARE REVIEWED BY THE ORGANIZATION'S SCIENTIFIC STAFF TO DETERMINE PROGRESS. THE FINAL GRANT PAYMENT IS CONTINGENT UPON RECEIPT AND APPROVAL OF THE REPORT OF EXPENDITURES. REPORTS OF EXPENDITURES ARE REVIEWED AND APPROVED BY STAFF TO ENSURE INCURRED COSTS ARE APPROPRIATE. THE GRANTS TO THE MIDDLE EAST/NORTH AFRICA REGION WERE MADE TO THE RESEARCH FUND OF THE HADASSAH MEDICAL ORGANIZATION, THE HEBREW UNIVERSITY OF JERUSALEM, AND CLALIT HEALTH SERVICES IN ISRAEL. FOREIGN FORMS THE ACTIVITIES REFERENCED IN SCHEDULE F, PART IV ARE LIMITED TO CERTAIN OF THE FOUNDATION'S INVESTMENTS. X X X X X X true LAUTMAN MASKA NEILL CO MAIL COUNSEL false 8817851 240000 8577851 THE PURSUANT GROUP INC DATA ANALYSIS false 0 83686 8817851 323686 8577851 AL AK AZ AR CA CO CT DE FL GA HI ID IL IN IA KS LA ME MD MA MI MN MS MO MT NE NV NH NJ NM NY NC ND OH OK OR PA RI SC SD TN TX UT VT VA WA WV WI WY SKI 2854425 1434338 1420087 110995 705583 353347 250162 ATLANTA WALK 3359794 3200325 159469 23310 38286 70583 6100 21190 882 89906008 75673961 14232047 9500 1304466 6679794 3860787 448450 1929050 96120227 80308624 15811603 9500 1438771 7423663 4284717 454550 2200402 15811603 135192 8999 false 135192 8999 8999 126193 CO IL KS MT NH TX true false false false 1.00000 THE ORGANIZATION 4550 MONTGOMERY AVE SUITE 1100N BETHESDA MD 20814 false NA false PROFESSIONAL FUNDRAISING SERVICES SCHEDULE G, PART I, LINE 2B CFF HAD A WRITTEN CONTRACT WITH LAUTMAN MASKA NEILL & COMPANY TO CONSULT ON ITS DIRECT MAIL AND ANNUAL FUND EFFORTS DURING 2019. THE EXPENSE FOR THE PROJECT IS $20,000 PER MONTH OR $240,000 FOR THE ENTIRE YEAR OF SERVICES. IN ADDITION TO THE CONSULTING ACTIVITIES THAT MAY BE CONSIDERED PROFESSIONAL FUNDRAISING SERVICES, CFF ALSO ENGAGED LAUTMAN MASKA NEILL & COMPANY FOR CREATIVE DEVELOPMENT. LAUTMAN MASKA NEILL & COMPANY DOES NOT COLLECT ANY FUNDS ON BEHALF OF CFF. ALL DONATIONS THAT RESULT FROM MAILINGS WITH WHICH LAUTMAN MASKA NEILL & COMPANY ASSISTS ARE MADE PAYABLE DIRECTLY TO THE FOUNDATION. CFF HAD A WRITTEN CONTRACT WITH THE PURSUANT GROUP, INC TO CONDUCT DONOR FILE ANALYSIS AND SEGMENTATION DURING 2019. THE EXPENSE FOR THE PROJECT WAS $83,686. IN ADDITION TO THE ACTIVITIES THAT MAY BE CONSIDERED PROFESSIONAL FUNDRAISING SERVICES, CFF ALSO ENGAGED THE PURSUANT GROUP FOR CREATIVE DEVELOPMENT. THE PURSUANT GROUP DOES NOT COLLECT ANY FUNDS ON BEHALF OF CFF. ALL DONATIONS THAT RESULT FROM ANALYSIS PERFORMED BY THE PURSUANT GROUP ARE MADE PAYABLE DIRECTLY TO THE FOUNDATION. SCHEDULE G, PART III ON OCCASION, THE CYSTIC FIBROSIS FOUNDATION CONDUCTS RAFFLES, DRAWINGS, OR GAMES OF CHANCE AS PART OF ITS FUNDRAISING EVENTS. GAMING LICENSES ARE OBTAINED WHEN APPLICABLE PER STATE OR LOCAL REGULATION. THERE ARE CERTAIN STATES WHERE CFF ONLY CONDUCTS OPPORTUNITY DRAWINGS. NO OUTSIDE PARTY HAD ANY INVOLVEMENT IN GAMING ACTIVITIES AND THESE ACTIVITIES DO NOT GENERATE UNRELATED BUSINESS INCOME. THE EXECUTIVE DIRECTOR OF EACH OFFICE IS RESPONSIBLE FOR OVERSEEING GAMING ACTIVITIES CONDUCTED BY THEIR OFFICE. true 3RD STREET SOCIETY 107 E INDIAN AVENUE PO BOX 1012 FOLLY BEACH SC 29439 821635295 501C(3) 6856 COMMUNITY IMPACT ADVOCATE CHARITABLE FOUNDATION 3075 HIGHLAND PARKWAY SUITE 600 SUITE 600 DOWNERS GROVE IL 60515 363297360 501C(3) 114940 CF CARE CENTER ADVOCATE HEALTH AND HOSPITALS CORPORATION 3075 HIGHLAND PARKWAY SUITE 600 DOWNERS GROVE IL 695151288 362169147 501C(3) 29160 CF CARE CENTER ALBANY MEDICAL COLLEGE 47 NEW SCOTLAND AVENUE ALBANY NY 12298 141338310 501C(3) 24420 CLINICAL RESEARCH CENTER ALBANY MEDICAL COLLEGE 47 NEW SCOTLAND AVENUE ALBANY NY 12298 141338310 501C(3) 141110 CF CARE CENTER ALL CHILDREN'S HOSPITAL INC 3910 KESWICK ROAD BALTIMORE MD 21211 590683252 501C(3) 38000 CLINICAL RESEARCH CENTER ALL CHILDREN'S HOSPITAL INC 3910 KESWICK ROAD S BLDG NO 4300A BALTIMORE MD 21211 590683252 501C(3) 165420 CF CARE CENTER ANN AND ROBERT H LURIE CHILDREN'S HOSPITAL OF CHI 225 E CHICAGO AVE S BLDG NO 4300A CHICAGO IL 606112991 362170833 501C(3) 70461 CLINICAL RESEARCH CENTER ANN AND ROBERT H LURIE CHILDREN'S HOSPITAL OF CHI 225 E CHICAGO AVE BOX 282 CHICAGO IL 606112991 362170833 501C(3) 81000 THERAPEUTICS DISCOVERY RESEARCH ANN AND ROBERT H LURIE CHILDREN'S HOSPITAL OF CHI 225 E CHICAGO AVE BOX 282 CHICAGO IL 606112991 362170833 501C(3) 241754 CLINICAL RESEARCH STUDY ANN AND ROBERT H LURIE CHILDREN'S HOSPITAL OF CHI 225 E CHICAGO AVE BOX 282 CHICAGO IL 606112991 362170833 501C(3) 242021 CF CARE CENTER ANN AND ROBERT H LURIE CHILDREN'S HOSPITAL OF CHI 225 E CHICAGO AVE BOX 282 CHICAGO IL 606112991 362170833 501C(3) 523157 QUALITY IMPROVEMENT ARIZONA BOARD OF REGENTS UNIVERSITY OF ARIZONA 1303 E UNIVERSITY BOX 282 TUCSON AZ 857190521 742652689 IRC 115 34560 ADHERENCE ARIZONA BOARD OF REGENTS UNIVERSITY OF ARIZONA 1303 E UNIVERSITY BOX 3 TUCSON AZ 857190521 742652689 IRC 115 36920 CLINICAL RESEARCH CENTER ARIZONA BOARD OF REGENTS UNIVERSITY OF ARIZONA 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278750 TRAINING THE CHILDREN'S MERCY HOSPITAL 2401 GILLHAM ROAD KANSAS CITY MO 64108 440605373 501C(3) 62552 CLINICAL RESEARCH CENTER THE CHILDREN'S MERCY HOSPITAL 2401 GILLHAM ROAD KANSAS CITY MO 64108 440605373 501C(3) 162320 CF CARE CENTER THE CLEVELAND CLINIC FOUNDATION 9500 EUCLID AVENUE CLEVELAND OH 44131 340714585 501C(3) 13468 CLINICAL RESEARCH CENTER THE CLEVELAND CLINIC FOUNDATION 9500 EUCLID AVENUE JJN5 CLEVELAND OH 44131 340714585 501C(3) 32133 THERAPEUTICS DISCOVERY RESEARCH THE CLEVELAND CLINIC FOUNDATION 9500 EUCLID AVENUE JJN5 CLEVELAND OH 44131 340714585 501C(3) 46440 ADULT CARE THE CLEVELAND CLINIC FOUNDATION 9500 EUCLID AVENUE JJN5 CLEVELAND OH 44131 340714585 501C(3) 76295 CF CARE CENTER THE CLEVELAND CLINIC FOUNDATION 9500 EUCLID AVENUE JJN5 CLEVELAND OH 44131 340714585 501C(3) 156032 CLINICAL CARE RESEARCH THE CLEVELAND CLINIC FOUNDATION 9500 EUCLID AVENUE JJN5 CLEVELAND OH 44131 340714585 501C(3) 238000 RESEARCH THE CURATORS OF THE UNIVERSITY OF MISSOURI 118 UNIVERSITY HALL JJN5 COLUMBIA MO 652118230 436003859 501C(3) 40325 ADULT CARE THE CURATORS OF THE UNIVERSITY OF MISSOURI 118 UNIVERSITY HALL COLUMBIA MO 652118230 436003859 501C(3) 81000 THERAPEUTICS DISCOVERY RESEARCH THE CURATORS OF THE UNIVERSITY OF MISSOURI 118 UNIVERSITY HALL COLUMBIA MO 652118230 436003859 501C(3) 169255 CF CARE CENTER THE CURATORS OF THE UNIVERSITY OF MISSOURI 118 UNIVERSITY HALL COLUMBIA MO 652118230 436003859 501C(3) 243000 RESEARCH THE FEINSTEIN INSTITUTE FOR MEDICAL RESEARCH 972 BRUSH HOLLOW ROAD WESTBURY NY 11590 112673595 501C(3) 43917 CLINICAL RESEARCH CENTER THE GENERAL HOSPITAL CORPORATION (MASSACHUSETTS GE 55 FRUIT STREET BOSTON MA 02114 042697983 501C(3) 34720 CLINICAL RESEARCH CENTER THE GENERAL HOSPITAL CORPORATION (MASSACHUSETTS GE 55 FRUIT STREET OFFICE OF SPONSORED PROGRAMS BOSTON MA 02114 042697983 501C(3) 71376 ADULT CARE THE GENERAL HOSPITAL CORPORATION (MASSACHUSETTS GE 55 FRUIT STREET OFFICE OF SPONSORED PROGRAMS BOSTON MA 02114 042697983 501C(3) 145600 CLINICAL CARE RESEARCH THE GENERAL HOSPITAL CORPORATION (MASSACHUSETTS GE 55 FRUIT STREET OFFICE OF SPONSORED PROGRAMS BOSTON MA 02114 042697983 501C(3) 160800 THERAPEUTICS DISCOVERY RESEARCH THE GENERAL HOSPITAL CORPORATION (MASSACHUSETTS GE 55 FRUIT STREET ONE SHIELDS AVENUE BOSTON MA 02114 042697983 501C(3) 175800 CF CARE CENTER THE GENERAL HOSPITAL CORPORATION (MASSACHUSETTS GE 55 FRUIT STREET ONE SHIELDS AVENUE BOSTON MA 02114 042697983 501C(3) 176250 TRAINING THE GENERAL HOSPITAL CORPORATION (MASSACHUSETTS GE 55 FRUIT STREET ONE SHIELDS AVENUE BOSTON MA 02114 042697983 501C(3) 189298 RESEARCH STUDY THE GENERAL HOSPITAL CORPORATION (MASSACHUSETTS GE 55 FRUIT STREET 10920 WILSHIRE BLVD SUITE 200 BOSTON MA 02114 042697983 501C(3) 265000 RESEARCH THE GENERAL HOSPITAL CORPORATION (MASSACHUSETTS GE 55 FRUIT STREET 10920 WILSHIRE BLVD SUITE 200 BOSTON MA 02114 042697983 501C(3) 439347 CLINICAL RESEARCH CENTER THE GENERAL HOSPITAL CORPORATION (MASSACHUSETTS GE 55 FRUIT STREET BOSTON MA 02114 042697983 501C(3) 441398 QUALITY IMPROVEMENT THE HITCHCOCK FOUNDATION ONE MEDICAL CENTER DRIVE LEBANON NH 03756 020222139 501C(3) 35400 ADULT CARE THE HITCHCOCK FOUNDATION ONE MEDICAL CENTER DRIVE LEBANON NH 03756 020222139 501C(3) 44767 CLINICAL RESEARCH CENTER THE HITCHCOCK FOUNDATION ONE MEDICAL CENTER DRIVE LEBANON NH 03756 020222139 501C(3) 179185 CF CARE CENTER THE JOHNS HOPKINS UNIVERSITY 3910 KESWICK ROAD 3333 CALIFORNIA STREET SUITE 315 BALTIMORE MD 21211 520595110 501C(3) 27439 QUALITY IMPROVEMENT THE JOHNS HOPKINS UNIVERSITY 3910 KESWICK ROAD NO N4327B BALTIMORE MD 21211 520595110 501C(3) 32400 ADHERENCE THE JOHNS HOPKINS UNIVERSITY 3910 KESWICK ROAD NO N4327B BALTIMORE MD 21211 520595110 501C(3) 99705 RESEARCH CENTER THE JOHNS HOPKINS UNIVERSITY 3910 KESWICK ROAD NO N4327B BALTIMORE MD 21211 520595110 501C(3) 135000 RESEARCH THE JOHNS HOPKINS UNIVERSITY 3910 KESWICK ROAD NO N4327B BALTIMORE MD 21211 520595110 501C(3) 158000 PILOT STUDY THE JOHNS HOPKINS UNIVERSITY 3910 KESWICK ROAD NO N4327B BALTIMORE MD 21211 520595110 501C(3) 241910 CLINICAL RESEARCH CENTER THE JOHNS HOPKINS UNIVERSITY 3910 KESWICK ROAD NO N4327B BALTIMORE MD 21211 520595110 501C(3) 342038 TRAINING THE JOHNS HOPKINS UNIVERSITY 3910 KESWICK ROAD NO N4327B BALTIMORE MD 21211 520595110 501C(3) 389342 CLINICAL RESEARCH THE JOHNS HOPKINS UNIVERSITY 3910 KESWICK ROAD NO N4327B BALTIMORE MD 21211 520595110 501C(3) 437334 CF CARE CENTER THE JOHNS HOPKINS UNIVERSITY 3910 KESWICK ROAD NO N4327B BALTIMORE MD 21211 520595110 501C(3) 630093 THERAPEUTICS DISCOVERY RESEARCH THE JOHNS HOPKINS UNIVERSITY 3910 KESWICK ROAD NO N4327B BALTIMORE MD 21211 520595110 501C(3) 797104 CLINICAL CARE RESEARCH THE JOHNS HOPKINS UNIVERSITY 3910 KESWICK ROAD NO N4327B BALTIMORE MD 21211 520595110 501C(3) 943026 CLINICAL RESEARCH STUDY THE MEDICAL COLLEGE OF WISCONSIN 8701 WATERTOWN PLANK ROAD NO N4327B MILWAUKEE WI 532263548 390806261 501C(3) 43443 CLINICAL RESEARCH CENTER THE MEDICAL COLLEGE OF WISCONSIN 8701 WATERTOWN PLANK ROAD MILWAUKEE WI 532263548 390806261 501C(3) 68538 CLINICAL RESEARCH THE MEDICAL COLLEGE OF WISCONSIN 8701 WATERTOWN PLANK ROAD MILWAUKEE WI 532263548 390806261 501C(3) 316575 CF CARE CENTER THE OHIO STATE UNIVERSITY 1960 KENNY ROAD COLUMBUS OH 432101016 316025986 IRC 115 54000 PILOT STUDY THE OHIO STATE UNIVERSITY 1960 KENNY ROAD COLUMBUS OH 432101016 316025986 IRC 115 131323 RESEARCH THE RECTOR AND VISITORS OF THE UNIVERSITY OF VIRGI 1001 NORTH EMMET STREET CHARLOTTESVILLE VA 22903 546001796 501C(3) 74703 ADULT CARE THE RECTOR AND VISITORS OF THE UNIVERSITY OF VIRGI 1001 NORTH EMMET STREET CHARLOTTESVILLE VA 22903 546001796 501C(3) 190495 CF CARE CENTER THE REGENTS OF THE UNIVERSITY OF CALIFORNIA DAVIS ONE SHIELDS AVENUE DAVIS CA 95618 946036494 501C(3) 40126 ADULT CARE THE REGENTS OF THE UNIVERSITY OF CALIFORNIA DAVIS ONE SHIELDS AVENUE DAVIS CA 95618 946036494 501C(3) 129570 CF CARE CENTER THE REGENTS OF THE UNIVERSITY OF CALIFORNIA LOS A 10889 WILSHIRE BOULEVARD DEPT 4656 / REF 413407 LOS ANGELES CA 90095 956006143 501C(3) 92880 ADULT CARE THE REGENTS OF THE UNIVERSITY OF CALIFORNIA LOS A 10889 WILSHIRE BOULEVARD SUITE 700 BOX 951406 LOS ANGELES CA 90095 956006143 501C(3) 154326 CF CARE CENTER THE REGENTS OF THE UNIVERSITY OF CALIFORNIA LOS A 10889 WILSHIRE BOULEVARD SUITE 700 BOX 951406 LOS ANGELES CA 90095 956006143 501C(3) 162000 THERAPEUTICS DISCOVERY RESEARCH THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN D 9500 GILMAN DRIVE SUITE 700 BOX 951406 LA JOLLA CA 920930953 956006144 501C(3) 30707 CLINICAL RESEARCH CENTER THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN D 9500 GILMAN DRIVE DEPT 4656 / REF 413407 LA JOLLA CA 920930953 956006144 501C(3) 252895 CF CARE CENTER THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN F 1855 FOLSOM STREET DEPT 4656 / REF 413407 SAN FRANCISCO CA 94143 946036493 501C(3) 17558 CLINICAL RESEARCH CENTER THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN F 1855 FOLSOM STREET BOX 0812 SAN FRANCISCO CA 94143 946036493 501C(3) 41142 ADULT CARE THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN F 1855 FOLSOM STREET BOX 0812 SAN FRANCISCO CA 94143 946036493 501C(3) 145600 CLINICAL CARE RESEARCH THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN F 1855 FOLSOM STREET BOX 0812 SAN FRANCISCO CA 94143 946036493 501C(3) 175000 RESEARCH CENTER THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN F 1855 FOLSOM STREET BOX 0812 SAN FRANCISCO CA 94143 946036493 501C(3) 238500 TRAINING THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN F 1855 FOLSOM STREET BOX 0812 SAN FRANCISCO CA 94143 946036493 501C(3) 291515 CF CARE CENTER THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN F 1855 FOLSOM STREET BOX 0812 SAN FRANCISCO CA 94143 946036493 501C(3) 763116 RESEARCH THE REGENTS OF THE UNIVERSITY OF MICHIGAN 5082 WOLVERINE TOWER BOX 0812 ANN ARBOR MI 481091287 386006309 501C(3) 17535 ADHERENCE THE REGENTS OF THE UNIVERSITY OF MICHIGAN 5082 WOLVERINE TOWER 3003 SOUTH STATE STREET ANN ARBOR MI 481091287 386006309 501C(3) 45003 CLINICAL RESEARCH CENTER THE REGENTS OF THE UNIVERSITY OF MICHIGAN 5082 WOLVERINE TOWER 3003 SOUTH STATE STREET ANN ARBOR MI 481091287 386006309 501C(3) 86472 ADULT CARE THE REGENTS OF THE UNIVERSITY OF MICHIGAN 5082 WOLVERINE TOWER 3003 SOUTH STATE STREET ANN ARBOR MI 481091287 386006309 501C(3) 337346 CLINICAL RESEARCH STUDY THE REGENTS OF THE UNIVERSITY OF MICHIGAN 5082 WOLVERINE TOWER 3003 SOUTH STATE STREET ANN ARBOR MI 481091287 386006309 501C(3) 415631 CF CARE CENTER THE REGENTS OF THE UNIVERSITY OF MICHIGAN 5082 WOLVERINE TOWER 3003 SOUTH STATE STREET ANN ARBOR MI 481091287 386006309 501C(3) 431362 THERAPEUTICS DISCOVERY RESEARCH THE REGENTS OF THE UNIVERSITY OF MICHIGAN 5082 WOLVERINE TOWER 3003 SOUTH STATE STREET ANN ARBOR MI 481091287 386006309 501C(3) 561096 CLINICAL CARE RESEARCH THE REGENTS OF THE UNIVERSITY OF MINNESOTA COURTHOUSE DEPT 106 3003 SOUTH STATE STREET BAGLEY MN 56621 416007513 501C(3) 53609 CLINICAL RESEARCH THE REGENTS OF THE UNIVERSITY OF MINNESOTA COURTHOUSE DEPT 106 213 MAIN AVE N BAGLEY MN 56621 416007513 501C(3) 104913 CLINICAL RESEARCH CENTER THE REGENTS OF THE UNIVERSITY OF MINNESOTA COURTHOUSE DEPT 106 213 MAIN AVE N BAGLEY MN 56621 416007513 501C(3) 305548 ADULT CARE THE REGENTS OF THE UNIVERSITY OF MINNESOTA COURTHOUSE DEPT 106 213 MAIN AVE N BAGLEY MN 56621 416007513 501C(3) 391603 CLINICAL CARE RESEARCH THE REGENTS OF THE UNIVERSITY OF MINNESOTA COURTHOUSE DEPT 106 213 MAIN AVE N BAGLEY MN 56621 416007513 501C(3) 410605 CF CARE CENTER THE RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HO 700 CHILDRENS DRIVE 213 MAIN AVE N COLUMBUS OH 432052664 316056230 501C(3) 63100 CLINICAL RESEARCH CENTER THE RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HO 700 CHILDRENS DRIVE COLUMBUS OH 432052664 316056230 501C(3) 145990 QUALITY IMPROVEMENT THE RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HO 700 CHILDRENS DRIVE COLUMBUS OH 432052664 316056230 501C(3) 229570 TRAINING THE RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HO 700 CHILDRENS DRIVE COLUMBUS OH 432052664 316056230 501C(3) 253594 THERAPEUTICS DISCOVERY RESEARCH THE RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HO 700 CHILDRENS DRIVE COLUMBUS OH 432052664 316056230 501C(3) 420075 CF CARE CENTER THE RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HO 700 CHILDRENS DRIVE COLUMBUS OH 432052664 316056230 501C(3) 500000 RESEARCH CENTER THE ROCKEFELLER UNIVERSITY 1230 YORK AVENUE NEW YORK NY 10065 131624158 501C(3) 279885 THERAPEUTICS DISCOVERY RESEARCH THE SALTY LIFE FOUNDATION 150 ANDREWS ROAD FAYETTEVILLE NC 28311 831723847 501C(3) 10000 COMMUNITY IMPACT THE SCRIPPS RESEARCH INSTITUTE 10550 N TORREY PINES ROAD SUITE 5A 13 LA JOLLA CA 92307 330435954 501C(3) 63100 RESEARCH STUDY THE TOLEDO HOSPITAL 2142 N COVE BLVD TOLEDO OH 43606 344428256 501C(3) 28545 CLINICAL RESEARCH CENTER THE TOLEDO HOSPITAL 2142 N COVE BLVD TOLEDO OH 43606 344428256 501C(3) 179457 CF CARE CENTER THE TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF 615 WEST 131ST STREET OFFICE OF SPONSORED RESEARCH NEW YORK NY 100277922 135598093 501C(3) 37828 ADULT CARE THE TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF 615 WEST 131ST STREET 3RD FLOOR NEW YORK NY 100277922 135598093 501C(3) 53544 PILOT STUDY THE TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF 615 WEST 131ST STREET 3RD FLOOR NEW YORK NY 100277922 135598093 501C(3) 67800 RESEARCH STUDY THE TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF 615 WEST 131ST STREET 3RD FLOOR NEW YORK NY 100277922 135598093 501C(3) 91478 CLINICAL RESEARCH CENTER THE TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF 615 WEST 131ST STREET 3RD FLOOR NEW YORK NY 100277922 135598093 501C(3) 145600 CLINICAL CARE RESEARCH THE TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF 615 WEST 131ST STREET 3RD FLOOR NEW YORK NY 100277922 135598093 501C(3) 329900 CF CARE CENTER THE TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF 615 WEST 131ST STREET 3RD FLOOR NEW YORK NY 100277922 135598093 501C(3) 540000 RESEARCH THE UNIVERSITY OF ALABAMA AT BIRMINGHAM 1720 2ND AVENUE SOUTH 3RD FLOOR BIRMINGHAM AL 352940111 636005396 501C(3) 31801 ADHERENCE THE UNIVERSITY OF ALABAMA AT BIRMINGHAM 1720 2ND AVENUE SOUTH AB 1170 BIRMINGHAM AL 352940111 636005396 501C(3) 63100 RESEARCH STUDY THE UNIVERSITY OF ALABAMA AT BIRMINGHAM 1720 2ND AVENUE SOUTH AB 1170 BIRMINGHAM AL 352940111 636005396 501C(3) 161839 PILOT STUDY THE UNIVERSITY OF ALABAMA AT BIRMINGHAM 1720 2ND AVENUE SOUTH AB 1170 BIRMINGHAM AL 352940111 636005396 501C(3) 192750 TRAINING THE UNIVERSITY OF ALABAMA AT BIRMINGHAM 1720 2ND AVENUE SOUTH AB 1170 BIRMINGHAM AL 352940111 636005396 501C(3) 266752 CLINICAL RESEARCH CENTER THE UNIVERSITY OF ALABAMA AT BIRMINGHAM 1720 2ND AVENUE SOUTH AB 1170 BIRMINGHAM AL 352940111 636005396 501C(3) 269200 RESEARCH THE UNIVERSITY OF ALABAMA AT BIRMINGHAM 1720 2ND AVENUE SOUTH AB 1170 BIRMINGHAM AL 352940111 636005396 501C(3) 300124 CF CARE CENTER THE UNIVERSITY OF ALABAMA AT BIRMINGHAM 1720 2ND AVENUE SOUTH AB 1170 BIRMINGHAM AL 352940111 636005396 501C(3) 371200 THERAPEUTICS DISCOVERY RESEARCH THE UNIVERSITY OF ALABAMA AT BIRMINGHAM 1720 2ND AVENUE SOUTH AB 1170 BIRMINGHAM AL 352940111 636005396 501C(3) 414064 CLINICAL RESEARCH THE UNIVERSITY OF ALABAMA AT BIRMINGHAM 1720 2ND AVENUE SOUTH AB 1170 BIRMINGHAM AL 352940111 636005396 501C(3) 480382 QUALITY IMPROVEMENT THE UNIVERSITY OF ALABAMA AT BIRMINGHAM 1720 2ND AVENUE SOUTH AB 1170 BIRMINGHAM AL 352940111 636005396 501C(3) 550000 RESEARCH CENTER THE UNIVERSITY OF ALABAMA AT BIRMINGHAM 1720 2ND AVENUE SOUTH AB 1170 BIRMINGHAM AL 352940111 636005396 501C(3) 561532 CLINICAL RESEARCH STUDY THE UNIVERSITY OF CHICAGO 5801 SOUTH ELLIS AVENUE AB 1170 CHICAGO IL 60637 362177139 501C(3) 227105 CF CARE CENTER THE UNIVERSITY OF MARYLAND COLLEGE PARK 7809 REGENTS DRIVE 7703 FLOYD CURL DRIVE COLLEGE PARK MD 207425141 526002033 IRC 115 54000 PILOT STUDY THE UNIVERSITY OF MARYLAND COLLEGE PARK 7809 REGENTS DRIVE 3112 LEE BUILDING COLLEGE PARK MD 207425141 526002033 IRC 115 65450 RESEARCH STUDY THE UNIVERSITY OF MARYLAND COLLEGE PARK 7809 REGENTS DRIVE 3112 LEE BUILDING COLLEGE PARK MD 207425141 526002033 IRC 115 135000 RESEARCH THE UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL 104 AIRPORT DRIVE SUITE 2200 3112 LEE BUILDING CHAPEL HILL NC 275991350 566001393 501C(3) 39679 ADULT CARE THE UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL 104 AIRPORT DRIVE SUITE 2200 CAMPUS BOX 1350 CHAPEL HILL NC 275991350 566001393 501C(3) 101406 CLINICAL RESEARCH THE UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL 104 AIRPORT DRIVE SUITE 2200 CAMPUS BOX 1350 CHAPEL HILL NC 275991350 566001393 501C(3) 128500 TRAINING THE UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL 104 AIRPORT DRIVE SUITE 2200 CAMPUS BOX 1350 CHAPEL HILL NC 275991350 566001393 501C(3) 194000 RESEARCH STUDY THE UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL 104 AIRPORT DRIVE SUITE 2200 CAMPUS BOX 1350 CHAPEL HILL NC 275991350 566001393 501C(3) 323722 PILOT STUDY THE UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL 104 AIRPORT DRIVE SUITE 2200 CAMPUS BOX 1350 CHAPEL HILL NC 275991350 566001393 501C(3) 343621 CLINICAL RESEARCH CENTER THE UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL 104 AIRPORT DRIVE SUITE 2200 CAMPUS BOX 1350 CHAPEL HILL NC 275991350 566001393 501C(3) 427043 CF CARE CENTER THE UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL 104 AIRPORT DRIVE SUITE 2200 CAMPUS BOX 1350 CHAPEL HILL NC 275991350 566001393 501C(3) 550000 RESEARCH CENTER THE UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL 104 AIRPORT DRIVE SUITE 2200 CAMPUS BOX 1350 CHAPEL HILL NC 275991350 566001393 501C(3) 886932 CLINICAL RESEARCH STUDY THE UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL 104 AIRPORT DRIVE SUITE 2200 CAMPUS BOX 1350 CHAPEL HILL NC 275991350 566001393 501C(3) 1599357 RESEARCH THE UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL 104 AIRPORT DRIVE SUITE 2200 CAMPUS BOX 1350 CHAPEL HILL NC 275991350 566001393 501C(3) 2856504 THERAPEUTICS DISCOVERY RESEARCH THE UNIVERSITY OF TENNESSEE 63 SOUTH DUNLAP STREET CAMPUS BOX 1350 MEMPHIS TN 38163 626001636 IRC 115 150460 CF CARE CENTER THE UNIVERSITY OF TEXAS AT AUSTIN 110 INNER CAMPUS DR SUITE 300 AUSTIN TX 78712 746000203 501C(3) 333500 THERAPEUTICS DISCOVERY RESEARCH THE UNIVERSITY OF TEXAS HEALTH SCIENCE CENTER AT H 7000 FANNIN STREET STOP K5300 HOUSTON TX 77030 741761309 501C(3) 1141588 THERAPEUTICS DISCOVERY RESEARCH THE UNIVERSITY OF TEXAS HEALTH SCIENCE CENTER AT S 7703 FLOYD CURL DRIVE SAN ANTONIO TX 782293900 741586031 501C(3) 152595 CF CARE CENTER THE UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTE 5323 HARRY HINES BLVD DALLAS TX 753909020 756002868 IRC 115 34534 ADHERENCE THE UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTE 5323 HARRY HINES BLVD MC 9029 DALLAS TX 753909020 756002868 IRC 115 41142 ADULT CARE THE UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTE 5323 HARRY HINES BLVD MC 9029 DALLAS TX 753909020 756002868 IRC 115 68170 CLINICAL RESEARCH THE UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTE 5323 HARRY HINES BLVD MC 9029 DALLAS TX 753909020 756002868 IRC 115 124334 RESEARCH THE UNIVERSITY 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060646973 501C(3) 142097 CLINICAL RESEARCH CENTER YALE UNIVERSITY 47 COLLEGE STREET SUITE 203 NEW HAVEN CT 065103209 060646973 501C(3) 390941 RESEARCH YALE UNIVERSITY 47 COLLEGE STREET SUITE 203 NEW HAVEN CT 065103209 060646973 501C(3) 810000 THERAPEUTICS DISCOVERY RESEARCH YALE UNIVERSITY 47 COLLEGE STREET SUITE 203 NEW HAVEN CT 065103209 060646973 501C(3) 65450 RESEARCH STUDY 231 9 FELLOWSHIPS 37 166762 COMMUNITY IMPACT 4 37500 SCHEDULE I, PART I, LINE 2 THE ORGANIZATION HAS PROCEDURES IN PLACE TO MONITOR THE SCIENTIFIC PROGRESS AND FINANCIAL ASPECTS OF GRANT FUNDS AWARDED TO ENTITIES INSIDE OF THE U.S. SPONSORED INSTITUTIONS ARE REQUIRED TO SUBMIT ANNUAL REPORTS OF EXPENDITURES AS WELL AS SCIENTIFIC PROGRESS REPORTS. SCIENTIFIC REPORTS ARE REVIEWED BY THE ORGANIZATION'S SCIENTIFIC STAFF TO ENSURE PROGRESS HAS BEEN ATTAINED. THE FINAL GRANT PAYMENT IS CONTINGENT UPON RECEIPT AND APPROVAL OF THE REPORT OF EXPENDITURES. REPORTS OF EXPENDITURES ARE REVIEWED AND APPROVED BY STAFF TO ENSURE INCURRED COSTS ARE APPROPRIATE. FOR GRANTS TO FOR-PROFIT ORGANIZATIONS THE CF FOUNDATION HAS PROCEDURES IN PLACE TO 1) SEE THAT THE GRANT FUNDS AWARDED ARE SPENT ONLY FOR THE PURPOSE FOR WHICH THE GRANT IS MADE AND 2) OBTAIN FULL AND COMPLETE REPORTS FROM THE GRANTEE ORGANIZATION ON HOW THE FUNDS ARE SPENT CONSISTENT WITH IRS GUIDELINES FOR EXPENDITURE RESPONSIBILITY. THE ORGANIZATION PERFORMS PRE-GRANT INQUIRIES DEALING WITH MATTERS SUCH AS THE IDENTITY, HISTORY, ACTIVITIES, AND PRACTICES OF THE GRANTEE TO GAIN REASONABLE ASSURANCE THAT THEY WILL USE THE GRANT FUNDS FOR THE PURPOSE FOR WHICH RECEIVED. ONCE A GRANT IS APPROVED, A WRITTEN AGREEMENT IS SIGNED BY BOTH THE ORGANIZATION AND THE GRANTEE THAT INCLUDES THE FOLLOWING AGREEMENTS: ANY AMOUNTS NOT USED FOR PURPOSES OF THE GRANT WILL BE REPAID, THE GRANTEE WILL KEEP RECORDS OF RECEIPTS AND EXPENDITURES AND MAKE THEM AVAILABLE TO THE GRANTOR AT REASONABLE TIMES, AND FUNDS CANNOT BE USED TO INFLUENCE LEGISLATION OR UNDERTAKE ANY NONEXEMPT ACTIVITY. SCHEDULE I, PART III SEE SUPPLEMENTAL INFORMATION FOR PART I, LINE 2 FOR PROCEDURES USED TO MONITOR THESE GRANTS. X X X X X X false true false false false false false true false PRESTON CAMPBELL MD PRESIDENT & CEO 699283 0 468016 0 128739 0 134964 0 25766 0 1456768 0 119446 0 JACK MAHLER MD CHIEF INVESTMENT OFFICER 585579 0 300000 0 244209 0 428284 0 25766 0 1583838 0 200000 0 MARC S GINSKY EXECUTIVE VP, COO & SECRETARY 506350 0 267795 0 24552 0 159977 0 36313 0 994987 0 101309 0 VERA H TWIGG EXECUTIVE VP & CFO 399129 0 198363 0 19000 0 84724 0 31939 0 733155 0 43080 0 C RICHARD MATTINGLY FORMER OFFICER 0 0 0 0 101212 0 0 0 0 0 101212 0 43100 0 BRUCE MARSHALL MD SENIOR VP, CLINICAL AFFAIRS 448893 0 112497 0 9144 0 44951 0 0 0 615485 0 0 0 WILLIAM SKACH MD SENIOR VP, RESEARCH AFFAIRS 422032 0 124020 0 7524 0 73296 0 35413 0 662285 0 16023 0 MICHAEL P BOYLE MD SR.VP,THERAPEUTICS DEVELOPMENT 428498 0 139226 0 4902 0 76239 0 34127 0 682992 0 17052 0 EARL LEE MANAGING DIRECTOR, INVESTMENTS 407004 0 387500 0 1140 0 28284 0 3276 0 827204 0 0 0 ERIC KOEHRSEN MANAGING DIRECTOR, INVESTMENTS 335246 0 388000 0 1026 0 145284 0 35927 0 905483 0 0 0 DRUCY S BOROWITZ MD SENIOR VP, COMMUNITY AFFAIRS 427484 0 105724 0 9144 0 28284 0 0 0 570636 0 0 0 CHRIS GEGELYS SENIOR VP, CHIEF LEGAL OFFICER 380463 0 125609 0 2622 0 41610 0 35117 0 585421 0 0 0 ANTHONY DURMOWICZ MD VP, CLINICAL DEVELOPMENT 416733 0 94867 0 7524 0 42429 0 2700 0 564253 0 0 0 PART I, LINE 4B - SUPPLEMENTAL NONQUALIFIED RETIREMENT PLAN: CERTAIN PERSONS LISTED IN FORM 990, PART VII, SECTION A PARTICIPATE IN A NONQUALIFIED DEFERRED COMPENSATION PLAN, UNDER WHICH INTERESTS ARE FORFEITED BY THE PARTICIPANT IF THE PARTICIPANT VOLUNTARILY TERMINATES EMPLOYMENT PRIOR TO THE DESIGNATED VESTING DATE. FURTHER INFORMATION ABOUT THE NONQUALIFIED DEFERRED COMPENSATION PLAN IN WHICH THOSE PERSONS PARTICIPATE, INCLUDING THE AMOUNT OF ANY PAYMENT MADE BY THE PLAN DURING THE REPORTING YEAR, IS PROVIDED IN THE ADDITIONAL INFORMATION FOR SCHEDULE J, PART II, BELOW. PART I, LINE 7 SEVERAL INDIVIDUALS LISTED IN FORM 990, PART VII, SECTION A, LINE 1A, PARTICIPATED IN THE FOUNDATION'S INCENTIVE COMPENSATION PLAN, FROM WHICH NON-FIXED PAYMENTS NOT DESCRIBED IN LINES 5 AND 6 WERE PAID. THE INCENTIVE COMPENSATION PLAN PAYS NON-FIXED PAYMENTS SUBJECT TO, AND BASED ON, THE ACHIEVEMENT OF ANNUAL PERFORMANCE OBJECTIVES ESTABLISHED IN ADVANCE BY THE COMPENSATION COMMITTEE OF THE BOARD OF TRUSTEES. IN ADDITION, THE INCENTIVE COMPENSATION PLAN PAYS NON-FIXED PAYMENTS THAT RELATE TO A THREE-YEAR PERFORMANCE PERIOD, SUBJECT TO, AND BASED ON, THE ACHIEVEMENT OF LONG-TERM PERFORMANCE OBJECTIVES ESTABLISHED IN ADVANCE BY THE COMPENSATION COMMITTEE OF THE BOARD. ANY FINANCIAL PERFORMANCE OBJECTIVES ESTABLISHED UNDER THE INCENTIVE COMPENSATION PLAN DO NOT INCLUDE PROGRAM-RELATED REVENUES SUCH AS ROYALTY STREAMS OR LUMP-SUM PAYMENTS, AND SALES PROCEEDS FROM TRANSFER OF THE FOREGOING TO THIRD PARTIES RELATED TO THE DEVELOPMENT AND APPROVAL OF CF DRUGS. PART II (A) NAME: P. CAMPBELL, M.D.; (B)(I) BASE COMPENSATION: BASE SALARY - $699,283; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT (1) - $208,570, LONG-TERM INCENTIVE PLAN PAYMENT, WHICH WAS PREVIOUSLY REPORTED (6) - $119,446, LONG-TERM INCENTIVE PLAN TREATMENT AWARD (9) $140,000; (B)(III) OTHER REPORTABLE COMPENSATION: TAXABLE GENERAL ORGANIZATION GROUP TERM LIFE INSURANCE PREMIUM - $9,144, AUTOMOBILE ALLOWANCE - $7,200, OTHER BENEFITS - $12,950, VESTED SERP ACCOUNT (8) - $99,445; (C) DEFERRED COMPENSATION: RETIREMENT BENEFIT (2) - $28,284, LONG-TERM INCENTIVE PLAN BENEFIT (6) - $106,680; (D) NONTAXABLE BENEFITS: EMPLOYER CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $17,675, EMPLOYEE CONTRIBUTION TO FLEXIBLE SPENDING ACCOUNT BENEFIT - $2,650, EMPLOYEE CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $5,441; (F) COMPENSATION REPORTED IN PRIOR FORM 990 (3) - $119,446. CYSTIC FIBROSIS FOUNDATION. (A) NAME: M. GINSKY.; (B)(I) BASE COMPENSATION: BASE SALARY - $506,350; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT (1) - $134,486, LONG-TERM INCENTIVE PLAN PAYMENT, WHICH WAS PREVIOUSLY REPORTED (6) - $101,309, LONG-TERM INCENTIVE PLAN TREATMENT AWARD (9) $32,000; (B)(III) OTHER REPORTABLE COMPENSATION: OTHER BENEFITS INCLUDING TAXABLE GENERAL ORGANIZATION GROUP TERM LIFE INSURANCE PREMIUM - $4,902, SECTION 457(B)PLAN (5) - $19,000, OTHER BENEFITS - $650; (C) DEFERRED COMPENSATION: RETIREMENT BENEFIT (2) - $28,284, LONG-TERM INCENTIVE PLAN BENEFIT (6) - $99,285, SERP (4) - $32,408; (D) NONTAXABLE BENEFITS: EMPLOYER CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $25,685, EMPLOYEE CONTRIBUTION TO FLEXIBLE SPENDING ACCOUNT BENEFIT - $2,700, EMPLOYEE CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $7,928; (F) COMPENSATION REPORTED IN PRIOR FORM 990 (3) - $101,309. CYSTIC FIBROSIS FOUNDATION. (A) NAME: V. TWIGG; (B)(I) BASE COMPENSATION: BASE SALARY - $399,129; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT (1) - $85,283, LONG-TERM INCENTIVE PLAN PAYMENT, WHICH WAS PREVIOUSLY REPORTED (6) - $43,080, LONG-TERM INCENTIVE PLAN TREATMENT AWARD (9) $70,000; (B)(III) OTHER REPORTABLE COMPENSATION: SECTION 457(B) PLAN (5) - $19,000; (C) DEFERRED COMPENSATION: RETIREMENT BENEFIT (2) - $28,284, LONG-TERM INCENTIVE PLAN BENEFIT (6) - $43,606, SERP (4) - $12,834; (D) NONTAXABLE BENEFITS: EMPLOYER CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $22,363 EMPLOYEE CONTRIBUTION TO FLEXIBLE SPENDING ACCOUNT BENEFIT - $2,700, EMPLOYEE CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $6,876; (F) COMPENSATION REPORTED IN PRIOR FORM 990 (3) - $43,080. CYSTIC FIBROSIS FOUNDATION. (A) NAME: J. MAHLER; (B)(I) BASE COMPENSATION: BASE SALARY - $585,579; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT (11) - $300,000; (B)(III) OTHER REPORTABLE COMPENSATION: OTHER BENEFITS INCLUDING TAXABLE GENERAL ORGANIZATION GROUP TERM LIFE INSURANCE PREMIUM - $7,524, VESTED SERP ACCOUNT (10) - 236,685; (C) DEFERRED COMPENSATION: RETIREMENT BENEFIT (2) - $28,284, SERP (4) - $100,000, DEFERRED ANNUAL INCENTIVE (11) $300,000; (D)NONTAXABLE BENEFITS: EMPLOYER CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $17,675, EMPLOYEE CONTRIBUTION TO FLEXIBLE SPENDING ACCOUNT BENEFIT - $2,650, EMPLOYEE CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $5,441; (F) COMPENSATION REPORTED IN PRIOR FORM 990 (3) - $200,000. CYSTIC FIBROSIS FOUNDATION. (A) NAME: R. MATTINGLY; (B)(III) OTHER REPORTABLE COMPENSATION: SECTION 457(B) PLAN DISTRIBUTION (7) - $101,212; (F)COMPENSATION REPORTED IN PRIOR FORM 990 (3) - $43,100. (1) THIS IS AN AWARD SUBJECT TO, AND BASED ON, ACHIEVEMENT OF ANNUAL PERFORMANCE STANDARDS ESTABLISHED IN ADVANCE BY THE COMPENSATION COMMITTEE OF THE BOARD. ANY FINANCIAL PERFORMANCE OBJECTIVES ESTABLISHED UNDER THE INCENTIVE COMPENSATION PLAN DO NOT INCLUDE PROGRAM-RELATED REVENUES SUCH AS ROYALTY STREAMS OR LUMP-SUM PAYMENTS, AND SALES PROCEEDS FROM TRANSFER OF THE FOREGOING TO THIRD PARTIES RELATED TO THE DEVELOPMENT AND APPROVAL OF CF DRUGS. (2) THIS IS THE EMPLOYER CONTRIBUTION MADE UNDER THE CYSTIC FIBROSIS FOUNDATION 401(K) PLAN FOR THE 2019 PLAN YEAR. (3) THIS AMOUNT IS INCLUDED IN COLUMN B OF THIS FORM 990 AND HAS ALREADY BEEN PREVIOUSLY REPORTED AS COMPENSATION ON PRIOR YEARS' FORM 990S, AND THEREFORE (AS REQUIRED BY THE INSTRUCTIONS) IS DOUBLE-REPORTED. (4) A. THIS IS AN UNVESTED EMPLOYER CONTRIBUTION TO THE SERP. B. SERP INTERESTS ARE FORFEITED BY THE PARTICIPANT IF THE PARTICIPANT VOLUNTARILY TERMINATES EMPLOYMENT PRIOR TO ATTAINING THE VESTING DATE DESIGNATED BY CFF (WHICH IS EITHER A SPECIFIED AGE OR DATE, DEPENDING ON THE PARTICIPANT). C. SERP INTERESTS ARE HELD IN A TRUST SUBJECT TO THE CLAIMS OF CFF'S BANKRUPTCY CREDITORS. IN THE EVENT OF A CFF BANKRUPTCY, PARTICIPANTS WOULD BECOME GENERAL UNSECURED CREDITORS OF CFF. D. THE SERP IS A NONQUALIFIED DEFERRED COMPENSATION PLAN. THIS MEANS THAT PARTICIPANTS DO NOT RECEIVE THE TAX BENEFITS AVAILABLE TO PARTICIPANTS IN TAX QUALIFIED RETIREMENT PLANS. FOR EXAMPLE, UNDER CURRENT LAW, INTERESTS UNDER SERPS ARE REPORTABLE AS TAXABLE COMPENSATION WHEN THEY BECOME VESTED, EVEN IF THOSE AMOUNTS ARE NOT YET PAYABLE TO THE PARTICIPANT (AND EVEN IF THOSE AMOUNTS ARE NEVER PAID TO THE PARTICIPANT). E. THE SERP'S DESIGN WAS REVIEWED AND OPINED UPON AS REASONABLE BY AN INDEPENDENT COMPENSATION CONSULTANT. F. CFF RETAINS THE RIGHT TO AMEND OR TERMINATE THE SERP AT ANY TIME. (5) A. THIS IS A VESTED CONTRIBUTION TO THE 457(B) PLAN FOR THE REPORTING PERIOD. B. IN THE EVENT OF A CFF BANKRUPTCY, PARTICIPANTS ARE GENERAL UNSECURED CREDITORS OF CFF. C. DISTRIBUTIONS FROM THE 457(B) PLAN MAY NOT BE ROLLED-OVER TO AN IRA OR QUALIFIED PLAN (BUT MAY ONLY BE TRANSFERRED TO ANOTHER 457(B)PLAN). D. THE 457(B) PLAN'S DESIGN WAS REVIEWED AND OPINED UPON AS REASONABLE BY AN INDEPENDENT COMPENSATION CONSULTANT. CONTRIBUTIONS TO THE 457(B) PLAN ARE SUBJECT TO ANNUAL IRS LIMITS ($19,000 FOR 2019). E. CFF RETAINS THE RIGHT TO AMEND OR TERMINATE THE 457(B) PLAN AT ANY TIME. (6) THIS PLAN PROVIDES FOR AWARDS THAT RELATE TO A THREE-YEAR PERFORMANCE PERIOD, SUBJECT TO, AND BASED ON, ACHIEVEMENT OF PERFORMANCE OBJECTIVES ESTABLISHED IN ADVANCE BY THE COMPENSATION COMMITTEE OF THE BOARD. ANY FINANCIAL PERFORMANCE OBJECTIVES ESTABLISHED UNDER THE INCENTIVE COMPENSATION PLAN DO NOT INCLUDE PROGRAM-RELATED REVENUES SUCH AS ROYALTY STREAMS OR LUMP-SUM PAYMENTS, AND SALES PROCEEDS FROM TRANSFER OF THE FOREGOING TO THIRD PARTIES RELATED TO THE DEVELOPMENT AND APPROVAL OF CF DRUGS. EACH YEAR, A NEW THREE-YEAR PERFORMANCE PERIOD BEGINS. AS REQUIRED BY THE FORM 990 INSTRUCTIONS, THE AMOUNTS REPORTED IN COLUMN (C)ON THIS FORM 990 REFLECT AN ESTIMATE OF THE PORTION OF EACH AWARD THAT THE EXECUTIVE ACCRUED UNDER THE PLAN FOR PERFORMANCE IN 2019 (I.E., WITH RESPECT TO THE 2017-2019, 2018-2020 AND THE 2019-2021 PERFORMANCE PERIODS), BUT THE AMOUNTS REPORTED IN COLUMN (C) HAVE NOT BEEN EARNED, AWARDED OR PAID UNDER THE PLAN. THE INDIVIDUAL MUST BE EMPLOYED ON 12/31/19, 12/31/20 AND 12/31/21 TO BE ELIGIBLE TO RECEIVE FULL PAYMENT OF THE AWARD FOR THE 2017-2019, 2018-2020 AND THE 2019-2021 PERFORMANCE PERIODS, RESPECTIVELY. THE AWARD RELATING TO THE 3-YEAR PERFORMANCE PERIOD ENDING 12/31/18 WAS PAID IN 2019, AND IS PROPERLY REPORTED AGAIN (AS COMPENSATION IN COLUMN (B)(II)) ON THIS FORM 990 (EVEN THOUGH AN ESTIMATE OF THE PORTION OF THIS AWARD THAT THE EXECUTIVE ACCRUED UNDER THE PLAN FOR PERFORMANCE IN 2018, 2017 AND 2016 WAS REPORTED IN COLUMN (C) OF THE FORM 990 FOR EACH OF THOSE YEARS). PART II, CONTINUED (7) THIS PAYMENT IS A DISTRIBUTION FROM THE 457(B) PLAN DESCRIBED IN FOOTNOTE (5) ABOVE. AS REQUIRED BY THE FORM 990 INSTRUCTIONS, BECAUSE CONTRIBUTIONS TO THIS PLAN ARE FULLY VESTED WHEN MADE, CONTRIBUTIONS TO THIS PLAN WERE PREVIOUSLY REPORTED IN THE YEARS CONTRIBUTED, IN COLUMN B(III) AS "OTHER REPORTABLE COMPENSATION". THOSE PREVIOUSLY REPORTED AMOUNTS ARE REFLECTED IN COLUMN F OF THIS FORM 990. (8) THIS AMOUNT IS A 2019 SERP CONTRIBUTION THAT ALSO BECAME VESTED AND TAXABLE IN 2019 UNDER THE SERP DESCRIBED IN FOOTNOTE (4) ABOVE. (9) THIS IS AN AWARD UNDER A PLAN THAT PAYS A SPECIFIED DOLLAR AMOUNT ONLY IF AND WHEN THE FDA APPROVES CERTAIN PRE-SPECIFIED TYPES OF THERAPIES. IN THE EVENT THE EMPLOYEE TERMINATES EMPLOYMENT PRIOR TO FDA APPROVAL OF THE SPECIFIED THERAPY TYPE AND PAYMENT OF THE AWARD, THE EMPLOYEE WILL FORFEIT HIS OR HER RIGHT TO RECEIVE PAYMENT, UNLESS THE EMPLOYEE IS AN OFFICER AND HIS/HER TERMINATION IS DUE TO RETIREMENT OR DISABILITY. THE PLAN TERMINATED ON DECEMBER 31, 2019. (10) THIS AMOUNT BECAME VESTED AND TAXABLE IN 2019 UNDER THE SERP DESCRIBED IN FOOTNOTE (4) ABOVE, UNDER WHICH THE INDIVIDUAL RECEIVED CONTRIBUTIONS FROM 2016-2017. AS REQUIRED, A PORTION OF THE CONTRIBUTIONS TO THIS SERP THAT GENERATED THE AMOUNT REPORTED IN COLUMN B (III) OF THIS FORM 990 WERE REPORTED ON PRIOR YEARS FORM 990S IN COLUMN (C). THOSE PREVIOUSLY REPORTED AMOUNTS ARE REFLECTED IN COLUMN F OF THIS FORM 990. (11) A. THE INVESTMENT DEPARTMENT INCENTIVE AND RETENTION PLAN PROVIDES AN AWARD SUBJECT TO, AND BASED ON, ACHIEVEMENT OF ANNUAL PERFORMANCE STANDARDS ESTABLISHED IN ADVANCE BY THE COMPENSATION COMMITTEE OF THE BOARD. B. UNDER THE PLAN, FIFTY PERCENT OF THE ANNUAL AWARD EARNED BY THE PARTICIPANT IS DEFERRED AND SUBJECT TO A SUBSTANTIAL RISK OF FORFEITURE. THE DEFERRED AWARD BECOMES VESTED AND PAID TWO YEARS AND A DAY AFTER IT IS DETERMINED THE AWARD HAS BEEN EARNED. THE DEFERRED AWARD IS FORFEITED BY THE PARTICIPANT IF THE PARTICIPANT VOLUNTARILY TERMINATES EMPLOYMENT OR IS TERMINATED FOR CAUSE PRIOR TO ATTAINING THE VESTING DATE. DEFERRED INTERESTS ARE SUBJECT TO THE CLAIMS OF CFF'S BANKRUPTCY CREDITORS. IN THE EVENT OF A CFF BANKRUPTCY, THE PARTICIPANT WOULD BECOME A GENERAL UNSECURED CREDITOR OF CFF. C. THE PLAN'S DESIGN WAS REVIEWED AND OPINED UPON AS REASONABLE BY AN INDEPENDENT COMPENSATION CONSULTANT. D. CFF RETAINS THE RIGHT TO AMEND OR TERMINATE THE PLAN AT ANY TIME. X 71 29999 NET CASH RECEIPTS X 139 1168733 NET CASH RECEIPTS X TANGIBLE AUCTION ITEMS 23495 9719508 NET CASH RECEIPTS false true true THIRD PARTY SELLER Schedule M, Part I, Line 6 CYSTIC FIBROSIS FOUNDATION CONTRACTS WITH A THIRD PARTY NON-PROFIT ORGANIZATION TO ADMINISTER ITS VEHICLE DONATION PROGRAM AND SELL DONATED VEHICLES. THE THIRD PARTY DOES NOT SOLICIT DONATIONS. CHAPTERS, AFFILIATES, AND BRANCHES PART VI, SECTION B, LINE 10B CYSTIC FIBROSIS FOUNDATION HAS NUMEROUS OFFICES LOCATED ACROSS THE UNITED STATES WHICH ADHERE TO THE POLICIES AND PROCEDURES OF THE ORGANIZATION. REVIEW OF 990 BY GOVERNING BODY PART VI, SECTION B, LINE 11B THE CYSTIC FIBROSIS FOUNDATION BOARD OF TRUSTEES RECEIVES A DRAFT OF THE FORM 990 PRIOR TO ITS BEING FILED, WITH SUFFICIENT TIME FOR REVIEW AND COMMENT ALLOWED. THE COMPENSATION COMMITTEE OF THE BOARD OF TRUSTEES AND THE FOUNDATION'S ERISA ATTORNEYS REVIEW THE EXECUTIVE COMPENSATION SECTIONS OF THE FORM 990. THE AUDIT COMMITTEE OF THE BOARD OF TRUSTEES ALSO REVIEWS THE FORM 990 AS PART OF ITS CHARTERED RESPONSIBILITIES. IN ALL CASES THE CYSTIC FIBROSIS FOUNDATION BOARD OF TRUSTEES RECEIVES A COMPLETE COPY OF THE FINAL FORM 990 BEFORE IT IS FILED. CONFLICT OF INTEREST MONITORING PART VI, SECTION B, LINE 12C A CONFLICT OF INTEREST DISCLOSURE STATEMENT IS COMPLETED ANNUALLY BY EACH BOARD MEMBER, OFFICER, AND KEY EMPLOYEE. POTENTIAL CONFLICTS ARE REPORTED TO THE GOVERNANCE COMMITTEE OR THE BOARD OF TRUSTEES. WHEN ANY MATTER IS DEEMED A POTENTIAL CONFLICT OF INTEREST AND REQUIRES ACTION BY THE BOARD OF TRUSTEES, THE INTERESTED TRUSTEE OR OFFICER IS REQUIRED TO RETIRE FROM THE ROOM IN WHICH THE BOARD OR ITS COMMITTEE IS MEETING, MAY NOT PARTICIPATE IN THE FINAL DELIBERATION OF THE MATTER, AND MAY NOT VOTE ON THE MATTER. THE ORGANIZATION ENFORCED THE POLICY DURING 2019 AND HAD NO UNRESOLVED CONFLICTS OF INTEREST. DETERMINING COMPENSATION PART VI, SECTION B, LINE 15A AND 15B THE TOTAL COMPENSATION OF EXECUTIVES AT THE CYSTIC FIBROSIS FOUNDATION IS SPECIFICALLY DESIGNED TO ATTRACT AND RETAIN THE HIGHEST QUALIFIED EXECUTIVE TALENT (WHICH INCLUDES HAVING MEDICAL AND/OR INVESTMENT BACKGROUNDS TO FULFILL THE CRITICALLY IMPORTANT MISSION OF CURING CYSTIC FIBROSIS AND PROVIDING ALL PEOPLE WITH THE DISEASE THE OPPORTUNITY TO LEAD LONG, FULFILING LIVES. THE INDEPENDENT COMPENSATION COMMITTEE OF THE CF FOUNDATION'S BOARD OF TRUSTEES FOLLOWS THE PROCESS DESCRIBED IN THE IRS INTERMEDIATE SANCTIONS RULES WHEN DETERMINING COMPENSATION. SPECIFICALLY, THE COMMITTEE: (1) IS COMPOSED ENTIRELY OF NON-EMPLOYEE VOLUNTEER DIRECTORS WHO HAVE NO FAMILIAL, BUSINESS OR SIGNIFICANT PERSONAL RELATIONSHIPS WITH THE CF FOUNDATION OR ITS EXECUTIVES. (2) ASSESSES THE SHORT-TERM AND LONG-TERM CONTRIBUTION AND PERFORMANCE OF EACH EXECUTIVE IN MEETING VERY DEFINITIVE AND QUANTIFIABLE OBJECTIVES FOCUSED ON THE CF FOUNDATION'S MISSION SUCCESS. (3) ENGAGES AN INDEPENDENT COMPENSATION CONSULTING FIRM TO COMPILE APPROPRIATE COMPARABILITY DATA (INCLUDING COMPENSATION MARKET INFORMATION FOR PEERS WITH WHOM THE CF FOUNDATION COMPETES FOR EXECUTIVE TALENT) FOR COMMITTEE RELIANCE. THE COMMITTEE MEETS WITH REPRESENTATIVES OF THE CONSULTING FIRM TO REVIEW THIS DATA IN DETAIL. 4) REVIEWS ALL ELEMENTS OF EACH EXECUTIVE'S TOTAL COMPENSATION, INCLUDING BUT NOT LIMITED TO BASE SALARY, BONUSES, PERQUISITES, FRINGE BENEFITS, AND INCENTIVE AND DEFERRED COMPENSATION ARRANGEMENTS. UPON THE EXECUTIVE'S HIRE, AND AT EACH POINT IN TIME THEREAFTER AT WHICH A NEW OR REVISED COMPENSATION ARRANGEMENT IS UNDER CONSIDERATION WITH RESPECT TO THE EXECUTIVE, THE COMMITTEE MEETS WITH ITS INDEPENDENT COMPENSATION CONSULTING FIRM BEFORE THE ARRANGEMENT IS IMPLEMENTED TO EVALUATE THE REASONABLENESS OF THE ARRANGEMENT BY COMPARING BOTH THE ARRANGEMENT ITSELF AND THE EXECUTIVE'S ENTIRE COMPENSATION PACKAGE TO COMPENSATION PACKAGES PAID BY SIMILARLY SITUATED ORGANIZATIONS FOR FUNCTIONALLY COMPARABLE POSITIONS. 5) DOCUMENTS, CONCURRENTLY WITH ITS DETERMINATION, THE BASIS FOR ITS DETERMINATION IN THE MINUTES OF ITS MEETING. THESE MINUTES ARE REVIEWED, REVISED IF NECESSARY AND APPROVED AT THE FOLLOWING MEETING OF THE COMMITTEE. (6) OBTAINS A WRITTEN LEGAL OPINION CONCERNING THE COMMITTEE'S COMPLIANCE WITH THE IRS INTERMEDIATE SANCTIONS RULES. THE PROCESS DESCRIBED ABOVE WAS USED TO ESTABLISH COMPENSATION FOR THE FOLLOWING OFFICERS OR KEY EMPLOYEES OF THE ORGANIZATION: PRESIDENT & CEO EXECUTIVE VICE PRESIDENT, COO AND SECRETARY EXECUTIVE VICE PRESIDENT AND CFO CHIEF INVESTMENT OFFICER SENIOR VP, THERAPEUTICS DEVELOPMENT SENIOR VP, RESEARCH AFFAIRS SENIOR VP, CLINICAL AFFAIRS THE PROCESS WAS LAST UNDERTAKEN IN 2018 WITH RESPECT TO COMPENSATION TO BE PAID IN 2019 TO ALL THE OFFICERS/KEY EMPLOYEES NAMED ABOVE. PART VI, SECTION C, LINE 19 PUBLIC INSPECTION FORMS 1023 AND 990-T FOR THE ORGANIZATION WERE AVAILABLE ON ITS WEBSITE, CFF.ORG AND THE ORGANIZATION'S WEBSITE PROVIDED A DIRECT LINK TO ITS FORM 990 ON GUIDESTAR.ORG. THE FOUNDATION'S GOVERNING DOCUMENTS (BYLAWS AND ARTICLES OF INCORPORATION) WERE AVAILABLE UPON REQUEST BY CONTACTING THE NATIONAL OFFICE OF THE CYSTIC FIBROSIS FOUNDATION IN WRITING OR BY PHONE. INFORMATION ON HOW TO OBTAIN THE GOVERNING DOCUMENTS WAS AVAILABLE ON THE FOUNDATION'S WEBSITE, WWW.CFF.ORG, DURING 2019. THE BOARD AND OFFICER CONFLICT OF INTEREST POLICY AND THE AUDITED FINANCIAL STATEMENTS WERE AVAILABLE ON THE FOUNDATION'S WEBSITE, WWW.CFF.ORG, DURING 2019. 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